Before and After (symptoms)

So today a couple of my Cushie friends asked me to send them my symptoms list that I had when I first was having problems. While rereading it to send to them because its been almost a year now (four months post op though) I noticed that WOW things have changed! I am hoping this will give someone hope! But this is my symptoms and in parenthesis is what it is like now after 4 months post op.

• Inability to lose weight no matter diet or exercise (able to lose weight now)
• Central Obesity (stomach 2 inches smaller) 
• Weight Gain 47 pounds in 6 months 80 pounds in one year (lost 23 pounds)
• Insomnia only sleeping 2-3 hours a night (restful sleep 8 plus hours)
• Buffalo Hump (yep its getting smaller)
• Moon Face (double chin getting smaller and can see cheek bones)
• Hot all the time even in a cold room (now I sleep under the blankets instead of on top)
• Thinning hair especially around my bangs area (new whispies appearing!)
• Red, Flushed Face (no more hot flashes)
• Heart Palpitations almost every night 120s (Heart rate is at normal level 60-80s)
• Blood Pressure on daily basis 160/110 (Now 123/80s)
• Not much of a Libido (Yeah for my husband its back)
• Stretch marks all over stomach and corners of breasts red and thick (starting to fade color)
• Low immune system. Bronchitis 6 times and walking pneumonia in 8 months (bronchitis one time in 4 months)
• Loss of words and work call (less and less but still have short term memory problems)
• Anxiety every night and out the roof (Anxiety only when actually called for)
• Mood Swings. (Husband said those are WAY less :)
• Weakening of Muscles Before Surgery could only lift 10-15lbs (lifting 30-45 pounds now)
• Fatigue just had no git up and go (still tired but it is better and I am doing a lot more)
• Whiskers popping up on chin (same)
• Bruising without even noticing I was bumping into anything (no bruising)
• Thinning skin, hurts to touch sometimes (seems to be toughening up because doesn't hurt as much)
• Major Aches and Pains (minor aches and pains except when hip goes out)
• Very slow healing with cuts or bug bites (faster healing but still slower than normal)
• Concentration is VERY weak (able to start and finish tasks with no problem)
• Depression and don't have a reason why really (feeling much better)

So in 4 months there has been so much change! Amazing because I realized it but didn't realize it as much until I saw my personal symptoms list. There really can be a light at the end of the tunnel with remission. Not everyone will have the same effects. Some more and some less but it does get better! If you are not there yet please feel free to always email me at cushingscountrygirl@gmail.com and lets help you find drs or help or support. I am not a DR by any means but I am willing to help you find support. If you are in remission and would like to share your story please email me also. We are working on a website of cushingstories where all stages of the disease are addressed through personal journeys.

Is it Remission? IS IT??

As you all know I am 3 months post op from having pituitary surgery to get a tumor out. I have had Cushings for at least 4 years but can go back about 6. I have been waiting on my 3 month tests to see if I am truly in Remission for Cushings Disease. This has been my mission.....to be in remission! Its everyone who has Cushings mission because we just want to feel better, get healthier, get our lives back! Today I feel like this lady!!!

I feel remission symptoms poking out more than my Cushings symptoms. In the last three months I have been now able to pick up almost 30 pounds instead of 10. I have lost 24 pounds even though I am still weening from cortisol. I sleep every night. No insomnia. My general mood is better. My hair is starting to grow back. I do not have high blood pressure anymore. I am not bruising at the slightest touch. I now get cold instead of always being hot and my life is starting to peak out! I am starting to see every single part of me repair although it maybe slow. My life is coming back! I see bigger and bigger peaks of me...of the Real Rae!
BUT................................I still worry. Am I remission? Or am I not? Am I in remission or am I not? Am I just getting better because they got most of my tumor out? Or do I have cells left and I just am feeling better and doing better but not truly in remission. I needed to make sure my testing was just as good as my symptoms were. Today was that day! I feel it was one of the best days of my life. Is that sad? Probably but this has been one of the battles that I hope will forever be over with! Its not easy by any means.

ACTH 13 (normal 6-50)

Cortisol at 8am blood draw 10.9 (4-22normal)

So I got all my test results back. I had 8am blood draw and I am in remission!! REMISSION! I have wanted to hear that for so long that I keep looking at myself in the mirror and saying to myself "Yes you are!". My cortisol is great now! So much lower than it ever was! These are great numbers for me to have. My acth has gone down so much! Even at the hospital on day 5 after my surgery  it was 25 so it has gone down to 13. To be honest guys...I am crying as I write this because I needed that validation from my numbers as much as from my symptoms.

I still need to remember that I am 3 months post op from a brain surgery. I have to remember that I am not that full on superwoman that I want to be. I have that peaking out and know its there. I have to be careful.I just had my daughters 16th bday party and it was a huge success. I knew it would take every last piece of energy out of me but with friends and family to help me it would be amazing. I have to remember to heal. I took that day and ran myself ragged. I will pay for that day for many days after but to me it was worth it. I found myself doing things that I couldn't do for a really long time. It was an amazing moment in time. I know that my daughter will remember her masquerade bday party forever because of it. Sweet 16! I had to do it....and I could! Before surgery there would be no way I could of done what I did that day. I even danced with my husband! I hadn't danced with him in years. I laughed! I had fun! I decorated and made it so she would remember this forever! I had great memories with her that I hope she will never forget. All this because my amazing Dr Edmonds, my endo Dr Friedman and my Neurosurgeon Dr. McCutcheon took the time and their knowledge to help me. These three men will always have a place in my heart for they gave me my life back! I am in Remission! Its a day to celebrate! Just like my daughters sweet 16......here are a couple pictures of that special day!

My daughter Cassie sweet 16 Masquerade Ball

My husband Ryan, My daughter Cassie and I

Ready for my first party after surgery (3 months)

My youngest son Jason Dancing

My middle son Joshua

My oldest son Jackson

Kids getting the dance floor set up

Yes I am a Cushie Mom

 

Christmas 2012

I am a mom of four teenagers and I am a Cushings Mom. I don't know which one is more exciting to read about so I will write about both :) I have a blended family which makes it so our teenagers are very close in age.We have been a family for almost 7 years now and I am very blessed that they get along so well!! Jackson is my oldest, 9 months later is Cassie, 18 months later is Joshua and then only 2 months later is Jason. They are my world! I joke with ppl in our community however  that next year I am moving to India so my husband will be left home with a 9,10,11, and 12 grader:) With being in a very small community you become very active in their school lives. Just today I have a football game to go to for two of them, a bake sale for one of them and a dinner to serve for another one of them. Its a busy busy life.

Josh & Jackson playing football

200 cupcakes made for a game

I have always been a very busy person who wanted to volunteer and help in anyway I could at the kids schools or for their sports or clubs. But the year before I had my surgery was VERY tough. It was hard to do any of that and I started to stay in more and more. I never knew when I would be sick. I started to feel like someone who would sign up for something to help and then feel like a flake because that day I would feel horrible. I never knew when I would sleep or not sleep. I started to feel as if I was losing myself. The sad part was my kids started to notice too. I would still do their bake sale but I would go get pre made things. I would still attend their games but I was gone right after it was over and in so much pain from sitting. I did it because I loved them. I pushed myself to do it. I would go to a game though whether it was football, volleyball, basketball or baseball for them and it would take me days to recover from that. I was sore. I couldn't sleep. I had a hard time getting in and out of our truck. I felt like I was failing as a mother. I would cry at night to my husband how I had lost myself and how they are going to grow up just seeing someone who was sick. They were helping me out more than I was helping them I felt. It was hard.....really hard! I am not going to lie....I cried a lot about how I wanted to be a better mom, a stronger mom for them. Thats when my husband had to step in a lot and help me. He had to become my superman....

He had to work and sometimes come home and cook meals, drive the kids to school functions or just help with chores at our ranch. I went from cooking from scratch to doing more premade stuff. And guess what! That was okay. My kids still loved it, they still grew and they still had good meals. I had to learn that doing things in a simple way was ok to do! It was! I didnt have to be perfect!I just had to be there for my kids. Talk to them, love on them, be with them. We did more movie nights at home together with fresh popcorn and we did more game nights.  I was blessed they were teenagers and could comprehend more of what was going on. It had its positive points and its negatives. I think it scared them more because they are at the age where they could go and research on their own or worry because they heard the word "tumor". A hard moment in my life was when my daughter gave me a bday painting (4 months before my surgery) and on the back she wrote this....

 It says..."Dear Mother, I created this painting because of your influences. You are Gods child just like many people. this was made because you will always be protected and of course you will be painting in watercolors. I hope that every time you see this, you will be safe, happy, healthy, and just in a good mood! This paper is being watched over by many angels, one of them is your own beautiful mother. I HOPE that by the third time you read this to yourself, you will be cured of cushings. That disease is crucial to leave because you cant do many things because of it. i hope that you will live the life that you have always wanted and that it goes in your direction. And guess what? In the middle of this ninja our dog just threw up. Hope my day gets better as well! (this part cracked me up folks!). So I hope, want, you will become a beautiful person that you have always wanted to be. Okay, even though you already are beautiful inside and out! love Cassandra. always praying".  Now tell me that wouldn't make you cry! 

My kids are all crazy and like to have fun like me! I am now 2.5 months post op and am getting my life back slowly! I love to cook and bake and am back to doing that daily. Even started canning! I went from only being able to lift 10 pounds to lifting 30plus now. I am losing weight, I am in a MUCH better place attitude wise and WANT to be around ppl again! I had hope! I had to fight to get here but I did it! It was worth it to me! I am enjoying my kids more and more. Not that I ever really stopped, I just was in a different place. Even my kids notice the changes and Cassie knows her prayers were answered.Here are some fun pictures of us in the last couple weeks....Things can change! I am living proof! We just need to have a good support system out there and if you dont have one at home....you can find them online! There are great Cushings groups on Facebook....I even started one myself called "Cushings!!" And there are great sites like Cushings-help.com where you can find tons of resources. If you ever need someone to talk to even please feel free to email me at Cushingscountrygirl@gmail.com and I will always respond!

Jason and I

My daughter Cassie

Jackson going hunting

Joshua and I

My Cushings Journey

Oh where do I begin? Lets start with I didnt even know what Cushings was and lets back track to the beginning....

The day I got diagnosed was my 6th time in the Drs office for Bronchitis that year and I had had walking pneumonia also. I went in and cried to my DR that I am barely eating, gaining weight, I am not sleeping but 2 hours a night and that I feel like I am going crazy and depressed, my body hurts and I am bruising all the time. He looked at me and said, "You have Cushings I bet". I looked back at him and thought is this man crazy? What is Cushings? He looked at my neck and said I had a buffalo hump, looked at my stomach and saw my stretch marks (straie) and looked at my food log and saw I was only eating 1400 calories a day and had gained 80 pounds in 1.5 years and was still gaining. 

NOW LETS GO BACK...

I had a hysterectomy 3 years ago and felt like I had hormone imbalances every since. Actually I felt like I had them before that even, but I always decided that the weight gain, the hair on my chin, the loss of muscle, the bruising, was all because of hormones from the hysterotomy. WELL it WAS from the hormones but not from that. I went to DR after DR after DR and they said my estrogen, testosterone etc was fine. Or they would give me a pill for depression or more estrogen to cure my hot flashes, red face etc. The depression pills never worked for me. I even went to a Dr that gave me more estrogen to take and then had their clinical psychologist call me to see if I wanted to come in to see them and talk because I "had bruising, cried a lot, was 37 and must have a bad home life". That made me so mad!! I wasn't getting beat! I left that clinic and went to another one. It was just meant to be because thats when my MD said to me that I must have Cushings. Look at my Buffalo Hump....

After he said I needed to test he set me up for two tests. An 8am cortisol blood draw and a DEX test. One came back positive and one negative. Then my Dr said well maybe not. By this time I had looked up everything I could on Cushings and started researching. This is also where I saw my co bloggers Vans video on Cushings which to this day she is my rock-star! My Dr referred me to two endocrinologists and they both turned me down. I researched Cushings specialists and decided to go to who I thought was the top endocrinologist at the time Dr. Friedman. He listened to me. I tested a lot!! Tested wrong at first even. Tested when I felt bad and I should of been testing when I felt good (on a high). So at first some of my tests were coming back normal because I would cycle. After learning more and figuring out my symptoms and when to test....they started coming back high, high and high. I went in for a MRI and they saw something that COULD be an tumor. I was scared and relieved at the same time. What a weird feeling to have. My endo saw a tumor on the left side and my neurosurgeon saw one he thought on the right. It was very confusing but  I was finally diagnosed in the beginning of July 2014 and had my surgery scheduled three weeks later in Houston at MD Anderson.

Once I was ready for surgery it could not come fast enough. I wanted to get rid of the tumor and was hopeful to get back to a normal life. By the time my surgery rolled around from the first time I even learned about Cushings my muscle wasting had me only able to lift about 10 pounds. I still wasn't sleeping. I was angry at nights and had so much anxiety that my foot would tap tap tap all the time. I was bruising if someone touched me hard or bumped me and most of all I was depressed because I felt as if my family would do better without me there. I am a mom of four teenagers.....it was hard when I couldn't do things for them. And I felt bad that my husband was really picking up the slack. I didn't even feel like ME anymore:( I wanted ME back. I wanted to ride my horse, shoot my bow, cook dinner and be able to move the pot of spaghetti etc. BUT NOW I HAD THE CHANCE!!

July 25th 2015 I had my surgery.   I was ready to jump up on the table to have my brain tumor removed. I had a calm that day and was prepared for it. My husband by my side and I waved at him and said "see you on the remission side". When out of surgery we were told that they had found TWO tumors that were connected underneath the pituitary and he felt they had gotten everything out. I was relieved.....

On our next blog is the video of a day before to 2 weeks after slideshow of pictures of my surgery. I am now 2.5 months post op and in remission! I take it day by day because recovery is hard and I have to remember that I am not going to be ME in one day! But glimpses of ME are coming more and more! I feel happier, I have lost 23 pounds, I am sleeping every night and all night long, I am not bruising, my brain fog is so much better and I am happy to be on the flip side~! I am still getting better day by day! 

Please feel free to email me at anytime at Cushingscountrygirl@gmail.com or I have a Facebook group called "cushings!!" that you can join for more information and of course check out Vans other blog onedelicateheart.blogspot.com